Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Monday, March 1, 2010

Day 33 / 13 at TCH - Monday, Monday ...


As it is suppose to be Connor was very sleepy this morning and I had to wake him up in time for medications and his Breakfast Club meeting. All weekend the nurses were compassionate and offered to let him sleep in and hold of on the meds but Connor was awake on Saturday and Sunday by 7 AM sharp.
Today we got our wake up call at 6:45 AM and I had to lift him out of bed by 7:20 AM....
Right now he is at his Breakfast Therapy and it started of not to well since it looks his food had gone missing. Never less I am still hopeful for today because he did give me a few smiles before I left :)

So I am back and I am posting now from our beautiful Home in Lake George. Goodness how much I miss this place and the one thing for perfection will be all four of us home together again.

Today went really well and was a happy day for Connor. For one Connor was exceptional in all of his therapy classes and according to all three therapists he was really pushing himself. He keep telling me he wants to go home and I guess he figured out the ticket that might get him there. He most likely will be sore tomorrow.

However the best part for us was being able to have some time as a family together. Ron and Alexander came around noon so we had time for some lunch before Connor was off for PT. The real treat came when his therapist, Miss Terrie Carrie :) sneaked in Alexander so we all could participate together. First Connor and Alexander got to play connect four, followed by car races and finishing up with all of us kicking a beach ball.
Another change today was the fact that Connors Psychiatrist talked at length with me this morning about Connor's mental state and also was asking about Alexander. He did spend some time with Connor and after hearing that Alexander was coming he said he would like to spend time with him as well. So when Connor had speech Alexander got to play games with the psychiatrist while Ron and I got about 15 min of alone time catching up on what was happening at home or here in the hospital.
We finished up with some coffee and cake time in the cafeteria and then it was Ron's turn to head up to the room with Connor while Alexander and I headed for freedom.

When I talked to Ron just a bit ago he did say that Connor was eating a lot tonight and I am wondering if this is due to him getting his Solumedrol again today ...
Alexander on the other hand is not eating very well and mostly just snacks here and there. I am so so so hoping that the arrival of my Mom and Dad on Friday will bring a change in that pattern and as mentioned before some regularity back in Alexanders life!

So and that brings me to a little worry-some thought for today. Ron mentioned something to me at the hospital and I was talking to Alexander on the drive home about it and it seems Alexander is having some pain in his feet and knees. I told him how it is hurting and he said it is okay he can walk but it hurts when he walks a lot ... can anyone reading this imagine what this thought process is doing to our brains right now? This is almost the same thing Connor said late November ......

So Ron did mention this to Dr. Soep and we might schedule Alexander to be tested in the near future. I guess just like the tethered spinal cord issue when we gave Connor an MRI just in case since he had no visual markers we might be doing the same with Alexander. Better safe then sorry and we rather catch it early then late.

Hugs,
R A C A

1 comment:

  1. I pray that Alexander is not suffering with the same symptoms as Connor. If he's hungry try CoCo Puffs! He ate a lot of them at my house. I got the impression he doesn't get them at home because he asked me to send him a box. He actually jumped all over Tyler for eating the last Puffs in the house even though I went to the store and bought more. He was so funny.

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